A boy who can’t speak depends on Medicaid. What happens to him if it’s cut?

Nathaniel Rankin was born with birth defects. He relies on Medicaid to get therapy and treatment. His parents worry he'll become "collateral damage" if the Trump administration changes the program.Dom Smith/STAT

FENTON, Mo. — When Kim and Rich Rankin decided to adopt, they figured they would bring home an older child. They were almost finished raising seven children, and thought they were done with babies.

Then they saw a photo of “Baby S,” with his soft eyes and round cheeks. Rich suggested putting it on the fridge.

“We’re going to bring that baby home if we put his picture on the refrigerator,” Kim recalled saying.

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That was what they did with the picture, and that was what they did with the baby. They called him Nathaniel — God’s gift.

Adopting Nathaniel also meant taking on his host of medical issues. Most seriously, he was born with extra tissue in his already abnormally narrow airway. He needed a tracheostomy tube inserted at the base of his neck to breathe. If it came out — which it sometimes did — they had less than two minutes to replace it.

As the Rankins recast their lives as parents of a medically demanding infant, one reassurance was that Nathaniel’s health care would be covered; as an adopted foster child, he could stay on the state’s Medicaid program. The Rankins would have to monitor Nathaniel’s many health problems, but they wouldn’t have to worry about whether they could afford to do so.

Now, though, the Rankins don’t feel so reassured. The Trump administration and congressional Republicans are weighing changes to Medicaid that could lead to cost savings and innovative reforms, but could also force states to cover fewer people and provide fewer services.

Care for patients like Nathaniel is expensive. The cost of the medical supplies he goes through just at home — suction catheters, oxygen tubes, tracheostomy ties, and so on — is about $5,000 each month.

“If the goal is to cut back,” Kim said, “these are the kiddos that will be hit.”

Now a headstrong 4-year-old with those same soft eyes and round cheeks, Nathaniel bounces through the Rankins’ home here outside St. Louis. He rings up his toy cash register and crashes his remote control car and sneaks into the toy closet. Outside, he digs in the dirt and pushes his red-and-yellow Fisher-Price car and stomps through woodchips.

But he is small for his age and hits milestones late. He may have permanent cognitive deficits, but it might just be that he’s spent so much time as a patient that he couldn’t keep up as a kid. He has heart and hand abnormalities. His medical team spans nurses, therapists, and specialists in two states. He will never be able to speak.

A photo of Nathaniel the Rankins were given before they adopted him. He was identified as “Baby S.”Rankin Family

The Rankins know they are not the poster family for Medicaid, which is often described as a safety net for the poor. Except for Nathaniel, the family has had private health insurance through Rich’s work as a carpenter.

Yet their case underscores how Medicaid covers a far more diverse population than is typically recognized; with more than 70 million beneficiaries, it is the largest insurer in the country. It covers some women who might not typically qualify if they are diagnosed with breast or cervical cancer. It is the main provider of long-term services for seniors and people with disabilities and pays for one-fourth of all mental health and substance abuse treatments. Forty percent of children rely on Medicaid.

The cost of the program is split between state and federal governments, with the federal government picking up a greater proportion in poorer states. If expenses grow, because a recession causes more people to enroll or the cost of expensive new drugs, for example, the federal government doles out more money. (The federal government pays for the large majority of the optional Medicaid expansion under the Affordable Care Act, which Missouri did not pursue.)

President Trump and leading Republicans — including House Speaker Paul Ryan and new Health and Human Services Secretary Tom Price — have proposed capping the amount of federal tax dollars delivered to each state. The plan could take the form of a block grant or a per capita allotment, but the goal is to cut spending and give states more authority to reshape their Medicaid programs.

“Caring for the most vulnerable patients must include not only ensuring they receive the care they need, but it must include ensuring programs like Medicaid that provide such care are sustainable,” House Republicans wrote last week outlining their health policy plans.

Some states, with permission from the Obama administration, have already launched Medicaid experiments, adopting cost-sharing provisions and pushing beneficiaries to consider how they get care. In Indiana, for example, some enrollees have to pay what are essentially premiums and can get penalized for using the emergency department for a non-emergency.

But supporters of block grants want states to be able to go further in their reforms, without being delayed by a federal review. Some Republicans, for example, have proposed letting states require able-bodied adults to work to remain eligible.

Seema Verma, Trump’s nominee to lead the Centers for Medicare and Medicaid Services, said at her confirmation hearing last week that block grants and per capita caps should be on the table.

“This is about putting states in a leadership role so that they can manage their programs better,” said Verma, who helped design the Indiana plan. “States are closer to the people that they serve than the federal government and they have a better understanding of what can work in their state.”

With limits on federal contributions, though, states would need to account for the lost funding as expenses rise. They could increase their contributions, but advocates and experts say they are more likely to charge beneficiaries, cut the amount they pay to clinicians, slash the services they provide, or limit who gets care.

“It’s a very effective policy if you want to reduce spending, but the question is, at what cost?” said Sayeh Nikpay, a Vanderbilt University health economist who recently wrote about Medicaid caps in the New England Journal of Medicine. “You end up reducing costs by covering very few people and covering very few benefits.”

Nathaniel Rankin waits for lunch at his home.Dom Smith/STAT

Nathaniel almost died the first night he spent in his new home.

A glob of mucus plugged his trach tube, robbing him of the ability to breathe. At the time, he was eight months old. His oxygen levels plummeted. His body turned gray, his lips blue. Finally, Kim was able to insert a new tube, and Rich pumped air into his lungs.

Kim and Rich couldn’t legally adopt him until after a six-month interim period, but that night, he became their son. Kim, 50, calls it their and Nathaniel’s birth story.

“You’re holding him in your hands, and life and death is right there,” Rich, 56, said. “That’s when I felt like I would grieve just as much for this child as I would any of my biological children.”

(Rich had two children from a previous marriage and he and Kim had five biological children; their other children are now between 17 and 34 years old.)

As his parents, Kim and Rich have fought to get Nathaniel the best care available. Last year, he underwent an operation at Cincinnati Children’s Hospital Medical Center that stopped him from aspirating food and liquids into his lungs. It also helped stabilize his airway so it’s not such an urgent emergency if his trach tube comes out.

But the surgery also made it impossible for him to ever be able to speak.

When Nathaniel cries, tears roll from his eyes and a silent strain is etched on his face, but he does not wail or whimper. The only sound he makes is a wet wheeze from the hole at the base of his neck, which grows louder and faster as he gets more upset. And when he cries — or laughs, or eats — he brings up phlegm into his airway that needs to be suctioned.

“God is our refuge and strength, a very present help in trouble. Therefore we will not fear,” reads a mural in the Rankins’ home, quoting Psalm 46.

Adopting Nathaniel has brought plenty of challenges for the Rankins and reshaped their lives in unanticipated ways. Kim thought she would be able to return to graduate school after a year of taking care of Nathaniel, but she is still his full-time caretaker.

But there have been countless gifts from falling in love with Nathaniel. Kim and Rich have seen their other children become more compassionate since they’ve had their new little brother.

Raising Nathaniel has also altered how they view politics.

“It’s been a wrestle,” Kim said. “Some of the things we believe are upheld by the Republican party and yet we have this child that we dearly love who is likely going to have services cut by people in the Republican party. It’s hard.”

In the end, despite the disagreements he had with her, Rich said he voted for Hillary Clinton in the 2016 election because he felt Nathaniel would be better served by her policies. (Kim didn’t want to say whom she voted for.)

The Rankins are not sure what Nathaniel’s future holds and are weighing what kind of school he should, or could, attend. But their goals also include enabling him to experience life like any 4-year-old boy would want to, maybe even joining the Boy Scouts one day.

Still, there are risks. He loves to play in water, but any water that gets into his trach tube goes straight into his lungs. During one airway emergency, when Nathaniel aspirated vomit into his lungs, the hospital treated him as a drowning victim.

“I just want to go backpacking with him,” Rich said. “I want to take him up a mountain.”

Nathaniel Rankin in 2013.Rankin Family

The big fear for the Rankins is that Nathaniel could lose access to his care or have it interrupted with the potential Medicaid changes. It’s taken plenty of phone calls from them, and letters from their doctors, but with his coverage, Nathaniel has been able to get what he needs: the operation by the airway specialists in Cincinnati, visits to his team of doctors in St. Louis, regular appointments with occupational and speech therapists.

There are other changes the Rankins worry about as well. Nathaniel used to be in a managed care plan, which is designed to coordinate care at lower costs. But Kim said it was harder to get the nursing support the Rankins felt Nathaniel required and took more involvement from his doctors, so he moved to a fee-for-service plan. If the state cuts Medicaid services, would he have to go back to managed care?

Nathaniel’s providers have said he should stay on Medicaid so his care isn’t disrupted, but if needed, the Rankins could add Nathaniel to their private insurance plan. But there are hitches there, too. The ACA prohibits insurance companies from setting limits on the expenses they will cover for individuals, but if the law is repealed and that provision is lost, the cost of Nathaniel’s care could quickly surpass any newly imposed limit.

“There is a lot of advocating we have to do for his care, so to add advocating for his insurance, that would just compound it,” Kim said.

Here in Missouri, state tax dollars account for 17 percent of the Medicaid budget, with 51 percent coming from the federal government and 31 percent coming from a tax on health providers. And some parts of the program are already facing cuts. In his recent budget plan, Governor Eric Greitens, a Republican who took office last month, proposed trimming Medicaid reimbursement rates.

Timothy McBride, a health economist at Washington University in St. Louis, said Missouri already had some of the strictest Medicaid eligibility requirements in the country, so if it lost some share of federal funding, it would have limited options.

“It would have to be dropping services and cutting back on provider payments,” said McBride, who chairs the state’s Medicaid oversight committee. “There’s really nothing else they could do.”

“Fold.”

Nathaniel and his speech pathologist, Jane Keegan Quarles, were making Valentine’s cards on a recent day at St. Louis Children’s Hospital, and she was showing him how to get his augmented communication device — a special app on an iPad — to say that word. She tapped a few symbols on the iPad and a computerized voice echoed: “Fold.” Quarles creased the card and handed it to Nathaniel, who doodled on it.

As they have thought about Nathaniel’s coverage, Kim and Rich have also wondered if potential cuts to Medicaid would discourage people from adopting children, especially those with intense medical needs. That would mean fewer kids like Nathaniel might find families like the Rankins.

“We took a risk in falling in love with Nathaniel, because there was no guarantee he was going to live,” Kim Rankin said one night at home. “I think so much of our culture, we want to guard against risk taking, we want to be certain that not only are we going to be OK, but that the people we love are going to be OK.

“And every day I wake up and I don’t know if Nathaniel is going to be OK,” she continued. “There are things that could happen to him that even now, after his airway surgery, could take his life that a normal child could breathe right through. But I think the rewards of taking risks for the sake of love has really been the most valuable lesson to me.”

Quarles and Nathaniel finished making their card and handed it to Kim. Quarles held up Nathaniel’s device and coached him to “use your words” to tell his mom something. She pointed, and he jabbed his finger at two symbols. “Love,” the voice said. Two more jabs: “You.”

One should not adopt and depends on nation’s welfare to pay for the child’s medical needs. It is not fair to taxpayers. Reduce welfare could lower taxes for everyone and let people who need the services pay for the services themselves.

These are what true patriots look like. If we are serious about “right to life”, we can not turn our backs on the most vulnerable in our society no matter the cost, even if it requires more taxes. All children should be covered automatically. If Planned Parenthood is defunded then every pregnant woman should be covered automatically.

It’s important to note that kids with disabilities grow up into adults with disabilities. And while some adults with disabilities are able to fully support themselves, many more can not.

Did you ever wonder who pays for group homes, or day programs, or transportation for adults with disabilities?

The answer is, Medicaid, through its Waiver program.

These programs aren’t cheap, either: in my area, the cost of a group home is close to $40,000 a year!

Right now, in my state, there is a limited number of Waivers; there are tens of thousands of children and adults with disabilities waiting for an available one. And these are clearly the good old days!

If Medicaid is block-granted, Ohio will have a limited amount of funding to pay for Waivers for the disabled, nursing home beds for the destitute elderly, and medical care for our low-income citizens.

I can’t begin to imagine the arithmetic but clearly there will be a lot of suffering because of the new limits on funding. Here, in the richest nation on the history of the world…

I am stunned by the selfishness of some of the comments to this article. This is not fear-mongering. It is introducing a real person so that those who are blind to their own communities can make an attempt to see what cuts to medicaid might mean in terms of real people. That young boy could be any child. His disability is unusual, but the care he needs is representative of a lot of people. His parents voluntarily took on his care. Without them, and without medicaid, this child would be dead. As it is, he is living a loved life, and a joyful one. And he may grow up to become an adult with a meaningful life, both in his terms and in society’s. This should be the goal for all people. Are these people who are criticizing this article saying we should just let him die? What is it they *are* saying? It is unrealistic to expect that in a complex society, a small community can accommodate all the needs of people who cannot afford the cost of medical care, or supportive services. In my opinion, we are all richer when we make it possible for people with needs to live as close to a normal life as they can achieve. I live in an ordinary place, in an ordinary neighborhood. I look around me and see people who did not choose what they were handed, and who do the best they can to live their lives well. Some of them require assistance. Human beings have always lived in communities. And communities have always had some means of helping those who needed it. In America, our sense of community extends to the nation. We, as Americans, have agreed to take this responsibility as a moral value. Even at that, we are far behind other nations, even many without our resources. And people who cannot see beyond their idealogies or beyond the fear-mongering that they themselves are perpetuating, are trying to dismantle what little we, as a nation not yet fully matured, have accomplished.

Do you know these people? Do you know enough about them to give them advise? I have always been taught that before one gives advise, be sure you know it is needed, and that it is useful. From reading the article, I think they have what they need. They are openly and honestly sharing their experience, and the things they have to be aware of, so that others can learn what many people in this country are up against. Your “advise” is gratuitous at best, and perhaps a bit on the arrogant side.

Why is our government trying to kill us dependent on Medicare ? We don’t get sick cause we want to. Why don’t they bring down the way to high prices of meds ? Do they get some kind of kickback ? What if it was one of their loved ones that needed help or them themselves, how would they feel ? What would they do with all that power they have then ?

Fear mongering doesn’t help anyone. Shame on you for trotting out a disabled child who does not receive benefits under the ACA, but a previously available pathway for the disabled, or children, or foster youth. I thought Stat was against “alternate facts”.

Fear mongering is telling people that they need to worry about radical terrorists that have only affected less than 400 people over 5 years. It was estimated by a Harvard 2009 study that people are 40% more likely to die if they have no insurance. In 2007 60% of people who filed bankruptcy, approx. 660,000 filed because of medical costs. Of those over 75% had insurance. these numbers were increasing substantially every year before the ACA. I used the 2009 stats because it was before the ACA and the 2007 stats because it was before the 2008 economic crisis. There are consequences for large numbers of people due to healthcare legislation.

It has not been established that medicare will be “cut” to the extent there will be suffering and death like the plague covering the U.S. Articles like this tend to elevate fear and distrust to a frenzied level. These articles usually contain photos of lovely young children in need of extensive care. We need to wait and see just what “cuts” if any will be applicable to those in honest need. To think there is not any graft and cheating in the system is not facing reality.

Thanks Linda, for catching my error on the program names …I did mean medicaid. Just wanted to point out the way the media escalates fear and distrust by running with rumors. Whenever the Democrats wanted to reinforce a program regardless of the program intent, they would always work in the phrase, “It’s for the kids”, knowing that is a big attention/sympathy getter.

I don’t want to “wait and see” if these cuts will directly affect my son’s medical needs. Let’s fight so that funding doesn’t change. I have to fight so hard to get what we have now and that is without the upcoming reduced funding.